Thursday, August 26, 2010

Follow Up appointment with Cardiologist

Jack had a visit with his worcester cardiologist today. It was a long appointment including an echocardiogram and an xray for Jack. The echo looked good and we are still awaiting the results to his xray. Hoping the fluid keeps getting smaller in his lungs. Jack's doctor and I had a long talk about Jack's not so distant future. Jack will definately be going back to childrens again a lot sooner than we thought. He will have to go back in 6 months to a year for another heart catherization. When they last did this procedure, they ballooned the aorta and the pulmonary artery. Well, the aorta will not have to be widened again but the pulmonary artery will have to be ballooned once again before his 3rd surgery. The pulmonary artery is different from the aorta as it acts more like a vein, and veins tend to shrink. So they need to keep it widened to make sure it functions properly.
Jack's doctor and I had a very extensive conversation about the upcoming winter season. All my fears have come back and we basically have to keep Jack in a bubble for another 6 months. As the doctor said, it is crucial that Jack stay healthy during this season. Holy Anxiety!! It really scares me to think that even just a common cold could put Jack back in the hospital with much more risk than just the common cold can give you. I am truly scared.
I just want to let the people around us know, that we would love more than anything to be able to share the joy of Jack with everyone in our little world. It breaks my heart that I can't be like any other new moms out there who get to show off their bundle of Joy. Especially with Jack being such a fighter and all that he has been through, I would love to spoil him with all the attention he deserves. But unfortunately we can't. Jack's health is more important to us than anything else we could ever imagine. I do hope that people understand. For the time being our lives have changed but thats all it is, is change. And to deal with Change you just have to except it and move on. So this is our new life and I can't lie, if it weren't for Jack I probably wouldn't enjoy it so much. If I am stuck in this house for months on end, and I have Jack with me, I am probably one of the happiest and luckiest ladies alive. One day Jack will be healthy enough to get out more, and I can't wait for that day!!

Wednesday, August 25, 2010

Another visit to Childrens Hospital

Jack spent last week at Childrens hospital due to fluid returning into his lungs. We think he was taken off his special formula too soon. But after a week of meds and observation he has finally gotten back on track and the fluid is going away again. During his stay at Childrens they were also able to diagnose Jack with Reflux. He has had many symptoms of Reflux and now he is on Medication to relieve his pain and symptoms. So although it was an unexpected visit to the hospital, we did get a lot accomplished while there. Jack is eating great again and we even started putting rice cereal in his formula, and he LOVES it! We will get his weight back on track.
Jack is doing very well now, and he is definately happy to be home. Mee too! Soooo glad to be home again. It's nice and quiet here...

Friday, August 13, 2010

4 weeks post op!! Jacks now 5MONTHS

Jack is 4 weeks post op today and he turned 5 Months yesterday! He had a cardiologist appointment yesterday and his doctor said he looks fantastic. We are still going to have a weekly appointment to keep an eye on the fluids in his lungs and he has a leak from his heart going to his liver. So we will have another echo this week to see how that is doing. We thought we were done for a couple of years but at yesterdays appointment, Jack will need another catherization in the near future to again widen the aorta and the pulmanary artery. Those are both the things they ballooned in his catherization 3 weeks ago. As Jack grows he will need to have them widened again sort of like another "tune up".
Jack is also back on regular formula. Im hoping this stuff fills him up and we go back on his sleeping through the night thing. He has been waking every 2 and a half hours to feed. Boy am I tired. It's like having a new born all over again. Don't get me wrong, I love the time I get to spend with him, but a girl needs her sleep! I am one tired Mamma!
Now that Jack is on his formula I asked the doctors if it would be ok to start giving Jack cereal. They were fine with it. So we gave him his first rice cereal last night, HE LOVED IT!!!! He ate it as if he couldn't get enough of it. Its so exciting to see him do new things. He holds his bottle, grabs his toys, rolls around, talks like crazy, and so many other things. He recognized himself in the mirror and just cracks up like its the funniest thing. Last night I was bouncing him up and down and when we were done, he would look at my mom like, did you see that nana? It was sooo cute! I love this little boy. Makes me smile every day.
Summer is almost over, I can't wait till the fall. This summer has been a humid one, being stuck in the house is no fun. I think and I am hoping I am right that this fall will be a good one!

Wednesday, August 4, 2010

Home Sweet Home... such bliss!!

Sorry for the late update. We got home monday night but I have been trying to get settled and get back into the swing of things. Jack is doing great. We had a visiting nurse come yesterday and he looked great. We go tomorrow for an appointment with his cardiologist at UMASS Memorial. He will have an xray and labs to see how the fluid in his lungs are doing.
Leaving childrens was a great thing but also very sad.. It was very cute, all the nurses were giving him kisses goodbye and Dr. Breitbart held Jack one last time. I was so sad that my camera was already in the car, because it really would have been such a great picture. But Dr. Breitbart said that he will see us in two years for his 3rd and hopefully final surgery. That felt good to hear. Hopefully all will go well with Jack and we wont have to go back to childrens until the next surgery. We are still going to be cautious with Jack. Ofcourse we will try to get out of our bubble in a few weeks after he is fully recovered from surgery. But we don't want Jack to get sick and end up back in the hospital. A common cold could be a really bad thing for Jack. It really is a scary thing but we still have to live a normal life as much as we can.
Justin and I are going to take Jack to the cape for labor day weekend. We haven't been on vacation since our honey moon and it will be nice to have some time as a family. Knowing that the cape isn't a far place from the hospital I know it will be a safe venture.
Thanks for all of your prayers. Two of our friends with sons who have HLHS will be having surgery tomorrow. Dylan will have his first of the 3 stages and Jacob will be having his Glenn just like Jack just did. So if you wouldn't mind, please share your prayers that you have been so generously giving for Jack to these two little boys. Both are fighters and both have wonderful parents that will see them through this scary time.
I will update after Jack's appointment, hopefully with good news that his fluid has decreased. I have been giving him four different meds twice a day and if all looks good, they will decrease the meds. Heres hoping!!

Sunday, August 1, 2010

Update on Jack

After the Catherization, they realized that Jack has Chilous. Its a fatty build up in his lungs. Weird though, the only thing to fix it is formula and and extra diuretic... So since the cath, Jack has been doing great. His oxygen levels have been back in the 80's and his heart rate a lot lower than it was. He seems to be Jack again.
We are waiting to have an xray in the morning to see if the fluid reduction has been consitant. If so we go home, if not we stay until they get it under control. But for the last few days there has not been any increase in fluid and some of the fluid has actually gone away.
So here's praying Jack is ok. Sorry I didn't update sooner. It has been a bit overwhelming and busy here. Now things are calming down. But keep your fingers crossed cause I know mine are that we go home tomorrow.